Home atmosphere aids stroke recovery

OVERLAND PARK, Kansas (AP) -- When Kolleen Arnold had a stroke at age 31, a doctor gave her husband little hope she would recover.

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Eight years later, Arnold has learned to walk and talk again, graduated cum laude with an associate degree and become a master gardener. She credits her family and a strong stubborn streak for her comeback.

"Doctors always tell you the bad news," Arnold said. "I'm the kind of person that when someone tells me I can't do something, I say, 'Wanna bet?"'

Today, Arnold shares her story and determination with other stroke survivors at an innovative experiment called the American Stroke Foundation.

The foundation is in an inviting house on a quiet residential street in this Kansas City suburb. It has no hint of a medical office.

The one-story house with a patio, spacious backyard and pool gives stroke survivors and their caregivers a place to share the battle and to relearn the basic skills their strokes have stolen from them.

"Sometimes they need to know things like 'How do you brush your teeth?"' said Arnold, who still can use only one arm. "I want to be an inspiration to people. And it helps my self-esteem to help them."

The foundation fills a void in the medical community, where stroke rehabilitation often ends after six weeks, when most insurance runs out -- leaving most survivors far from physical or emotional recovery.

"Stroke patients' therapy lasts as long as they have a medical need -- as determined by the insurance companies," said Dr. Steve Simon, who specializes in physical medicine and rehabilitation at the Mid-America Rehabilitation Hospital here. "So the amount of therapy has less to do with true need and more to do with the coverage they decided to purchase."

That was the impetus for Shirley Rose and her daughter, Robbie Small, when they decided to begin the foundation in 1996. Rose's husband, Stan, had a series of strokes beginning in 1995. He died in 1997. The Roses were co-founders of Sun Publications and well-known community leaders.

"I had money. I could afford in-home nursing care. I knew what resources were available. I had my family here. It was still awesome. I can't imagine taking even one of those things away and trying to get through it," Shirley Rose said.

She was especially disturbed by the lack of long-term services.

"The philosophy seemed to be 'take them to a nursing home and wait for them to die,"' she said. "There are a lot of people with strokes in nursing homes who shouldn't be, but it gets too difficult for the caregivers."

Any stroke survivor or caretaker can use the house, at no cost. Exercise, music, vision, computer and other practical programs are offered, all by experts who donate their time.

Survivors also use the house to relearn life skills such as laundry, cooking, cleaning and taking a shower.

"There is nothing else like it that I know of for stroke survivors," said Simon, who serves on the foundation's board. "Most people get therapy in a formal setting, with a trained therapist dispensing aid. There's nothing wrong with that, it's what I do all day.

"But this offers stroke survivors a non-medical person who can help with everyday how-tos. It also gives them more understanding, a comfortable group they can't find anywhere else."

Survivors get compassion, but not pity, from others at the house.

"We constantly preach, 'Use it or lose it,"' said Christy Axford Hall, executive director. "We offer shoulders to cry on. But when someone wants a glass of water, we say, 'Get your own water.' They can't recover if people keep waiting on them."

The foundation also is compiling a data bank to track stroke survivors' progress, in the hope that the data will help medical professionals change how stroke is treated.

With the exception of two paid staff members, the foundation is run by stroke survivors. That's another important part of the program, Simon said.

"Most people with strokes still have tremendous abilities; they can still think and do," Simon said. "Those people run this program. What greater impetus to push someone to do more for themselves than to say, 'That guy who helped me had a stroke too, and he can do it."'

Sharing with others is what drew Martha McDee and her husband, Joe, to the foundation after Joe had a stroke 31/2 years ago. McDee was alone caring for a husband who couldn't speak, needed four hours of rehabilitation every day and couldn't eat solid food for months. Today, Joe McDee still can't speak, but the couple has an otherwise normal life.

"Coming here, you meet a lot of nice people," Martha McDee said. "It helps you get over feeling like you're the only one in the world going through this. Anyone who hasn't been through it can't really understand it."

The new use of the house faced stiff opposition before the city issued a residential daycare permit. Opponents feared it would bring too much traffic and encourage other businesses to move into the neighborhood.

The city imposed several conditions, including limiting the number of people on site at any time to 15 and moving the business office to another location. Spot checks are conducted to make sure the home complies with the conditions.

The Kansas City-area medical community has embraced the foundation.

"It augments what we do, rather than replicating it," Simon said.

The foundation plans to hone its work for about two years before trying to expand to other parts of the country. Foundation leaders expect the idea to catch on.

"Eventually," Hall said, "people will look at what we're doing and say, 'Well, of course. Why didn't we think of that a long time ago?"'

Copyright 2000 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.

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